family

For the Love of Hospice

For the better part of a year or more my weeks have had to revolve around appointments. With 14 separate specialists each handling a different aspect of my health, you can imagine how the calendar filled up.  Most of these doctors have done me well, and helped me cope with the different challenges of  having a degenerative neuromuscular disease, but the past several months have left me exhausted each time I’ve had to leave my home, and resenting the several times a week that I had to spend my daily energy on seeing a doctor.  Helpful, yes, but the truth is there is no cure, and they’re all just doing their best to help me be more comfortable and handle the unpleasant side effects of my condition.

My husband and I had a very honest conversation about all this, and agreed it was time to get hospice involved.  Instead of running all the time from doctor to doctor, I wanted to spend more time at home with my loves spending what energy I do have on them.  I needed all the doctors consolidated into one master plan. It was the /best/ decision. 

The palliative care people? They’re a different breed.  I remembered this from my days working on the ambulance, but it was reaffirmed to me the first time I met my new team.  They aren’t out to find me a cure; their goal is to keep me as comfortable as I can be with what I’ve got, and that is exactly what I needed.  I was met with such kindness.  They weren’t rushed and bothered like so many; they took the time to see and understand me. They acknowledged and affirmed everything I was going through and feeling, and they committed to only do what I needed most.

Our days have slowed down.  I have found myself with more energy because there is less running around.  I’m so deeply grateful to shift our goals and focus on loving each other even more. My doctor is so kind, and readily available when I need something.  When I landed in the hospital with septic pneumonia recently, my palliative care team was there, and they were the ones who stayed extra in my room and laid comforting hands on me while we spoke, asked me how I was feeling, and truly sympathized with the pain I was experiencing and wanted to help.  I am learning a whole new level of compassion from these people, and I can’t help but wonder if I show the same love when someone needs me.  I sure aim to, and I’m thankful to have such incredible examples showing me the way.

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Hard Fight

I am here.

Head down, fighting hard over a perilous week, but still crawling to stand to chant the victory cheer.

It’s going to take some time for me to recover, but I will get there. In my quiet spaces, know I am deeply grateful for every kind word, thoughtful gift, and whispered prayer. You are my people.

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What If

Admittedly, my self esteem has suffered a bit as my body has wasted away, bearing the marks and shadows of the battle I fight, adorned with tubes and equipment that allow me more days. It’s rare I find myself out in public, but when I do, I find myself self-conscious, and aware of people’s curious stares.

Friday I was wrapped in my oxygen tubing, puffing and stumbling as I rolled my red hand-me-down walker through the door of the clinic. As soon as I scooted through the threshold there was a squeal. “Cooooool! You’re amazing!!!” I looked down to see a tiny spectacled girl staring up at me with a huge grin and a look of awe painted across her face. As I eased myself into a chair in the waiting room, she planted herself directly in front of me and continued to smile and admire my equipment.

Our encounter did not end before she excitedly took my walker for a test run back and forth, back and forth across the room, and my dear friend had her sit on it and pushed her whirling in donuts while she giggled and cheered. She left the room pink-cheeked and still grinning.

What if. What if we all were brave enough to make eye contact, to give a smile and a compliment to the things that puzzle us? What if we looked upon the marks of others’ suffering and found the parts that could make us smile? I think it would be a very bright world indeed.

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Pulling the Trigger

Last weekend, someone I love took his own life. It brought a whole new rawness to the mysteries I ponder over suicide.  It brought sadness and wondering and questioning from places that did not feel very good.

In the aftermath of the unexpected suicide of our beloved actor, Robin Williams, there was this heightened awareness of the possibility that anyone, at any time, could chose to end their own life.  I appreciated that it suddenly was not the elephant in the room, and  scatterings of suicide hotline ads lined public places and television commercials. People were having conversations about how a person gets to that place. It saddened me though that it took someone so iconic to bring about that shift. It saddens me more that once the shock wore off, we went right back to our comfortable lives and forgot about the life around us that keeps being snuffed out at their own hands.

flowers marguerites destroyed dead
Photo by Gratisography on Pexels.com

I will tell you, after working on an ambulance and in the ER for 13 years, the ones that actually do it are not the ones you think. Yes, often times the warning signs are there, but too often it is the person who never brought it up, the person who everyone thought had it all together, the person who had no reason to feel that way. Their loved ones stand in stunned disbelief. Those calls are some of the ones that haunt me the most.

One of my son’s classmates died by suicide not long ago.  The star of the team.  The boy who made everyone feel like a friend.  The boy no one expected.  What if that is exactly why he did it?  That’s a lot of pressure to maintain the status everyone looks up to.  That pushes the door wide open to feel not quite good enough.  I watched my son wrestle hard with the questions, and I didn’t know what to say.

It’s all around us.  It’s in the young boy angered by his parents’ divorce, the teenage girl struggling to fit in, the elderly man no longer visited by his family.  It’s in the movie star who seems to have it all, the business man who gives the perfect pitch, and the mother grieving the loss of her child.  It’s in the pastor’s wife, the put-together, the successful, and the disheveled.  It’s not only in the trauma, it’s also in the mundane.

Depression isn’t always because something terrible happened, sometimes it just shows up.  It’s stuffed and tucked and disguised and ignored, but remains that constant companion beneath the dull-eyed smile.  We frown upon it; frown because they must be doing something wrong, they’re not trying hard enough, or they aren’t thankful for what they have.  Wrong.  Depression can show up anytime, anywhere.  I know because I have fought it.

From bouts of post-partum depression after a few of my births, to a longer streak of hopelessness when my body was so worn, to a perfect joy-filled blessing-soaked day of wanting nothing but to cease to breathe, I realized this is not something so easily defined.

I do not know the answer.  I’m afraid no one does.  I want us to keep looking though.  Keep talking about it. Stop shaming people for seeking the help of a counselor, or for needing to take anti-depressants.  Stop entertaining your assumptions, and get out there and make people feel enough. Make them feel loved, and cared for, and seen.  Be kind.  Take the time to connect, even if it’s just for a few seconds.  I feel like none of us know when we might be the one standing between a person and their death.

adult alone anxious black and white
Photo by Kat Jayne on Pexels.com

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Monday

I feel like it’s been a few days since I’ve overshared, so let me fix that! For those if you keeping track, today is Monday, the day I get to disconnect from my port and not worry about the backsplash of the shower. So today, today friends, I yanked out that needle, made my way up the stairs to my daughters’ bath tub, filled it full hot, and added a bath bomb a dear friend brought me. I then plunked myself in and soaked until I resembled an albino prune. Two years since I’ve been able to submerge myself like that. It was glorious. I hope the rest of your April Fool’s is as fulfilling as mine has already been!

Please leave me a comment, it lets me know you’re listening!